Amir

 

Fezia, mother of Amir

Location: Kuala Lumpur, Malaysia

E-Mail: fezia@tm.net.my

Article:  "A Gift of Love"

Phone: 20949185

Age at time of accident: 18 months old

Date of accident: August 26, 1998

Where accident happened: Hobby (Koi) Fish Pond

Therapies tried:

Amir's Story:

The morning of the 26th August 1998,when I left for work was the last time I saw Amir waving goodbye to me-reluctantly. I often wondered if he had some premonition of his fate. It was the first time I had seen him fuss when I left work.  Little did I know then, it would be the last time in a long while that I would hear my little boy speak and call me “Mummy.”

That afternoon while we were at work{ the boys were looked after by a maid for those few hours when they came back from school), Amir decided he would follow his brothers to the neighbours where he could look at their fishpond. He loved looking at the fish and playing hide and seek with them and would giggle every time a fish reappeared from behind a rock. Amir had a very infectious giggle and was a joy to have around. The next time, he was seen -was lying face up in the pond, motionless-for how long ? nobody knew.

At time of initial evaluation at the ER, Amir had neither signs of respiration nor heartbeat, and he was immediately intubated and given external cardiac massage. Cardiac function was established after 10  minutes from commencement of resuscitation .Amir was transferred to the ICU where he was maintained on a ventilator support for 72 hours. At time of weaning he had difficulty in establishing adequate ventilation and could not be extubated. He had lost his swallowing reflex and his oxygen saturation kept falling.. Clinical evaluation indicated that there was significant residual neurological impairment. He had extensor spasticity in all four limbs, was cortically blind and did not respond to light nor sound. A tracheostomy was planned, since Amir was dependant on the intubation tube.

We were told that Amir may not survive and we were told to expect the worst, what the doctors didn’t realize was that my little boy was a fighter..

Amir was extubated and begun to breathe on his own, no tracheostomy was required. Amir was alive but about his functional ability??? After almost three months we were discharged  from the hospital with no hope and told to deal with the situation as best as we could and love our little boy.

As a mother I would love my children unconditionally and there was absolutely no question about this, but what was I going to do about my son who was now as stiff as an ironing board, with an arched back, body curved in a C shape. A mouth unable to open with a nasogastric tube to receive nutrition. I didn’t know, I was besides myself in grief.

GOD blessed me three wonderful sons and I had bonded with these lovely boys - I now became even more determined that I would have my  three boys. Not two, not two and a half but three boys.  I realized that Amir’s time was not up, God gave him back to me and gave me a 2nd chance.  I was determined that I would not let this chance pass me nor Amir by!  We are lucky we saw this chance.  Thus, began our long road towards rehabilitating Amir and our fight to give him back his life.  A new life began for all of us.

Amir was not the only one affected by the accident, our family had to make major changes. I could not work for a year as caring for Amir was a 24 hours job. I had no help at home and our now  single income plummeted with the high expenses involved in Amir’s rehabilitation. Almost all activities where money was involved were cut but the other boys did not seem to mind as they too were involved and they  are determined to have their little brother back. Our circle of “friends” began to shrink quite quickly as it became apparent that people with problems are not fun to be with!!!

The medical profession unfortunately did not help me very much as they seemed out to destroy every glimmer of hope I had.  I had nothing else to go on by but my faith in GOD and in Amir, Hope was all I had left and they had no right to take this away from me.  Many tears were shed after seeing doctors but seeing my little boy and knowing that he was responding to me kept me going – Amir motivated me and GOD gave me the strength to keep this fire burning in me!!  There were those few doctors who encouraged me when I went about starting my own “unconventional” rehabilitation programme and their approval prevented me from giving up.

We began Amir on a Sensory Stimulation Programme, slightly more than a year post accident. We chose to enroll him in a the Brain Net programme at the Allison Centre in the U.K. He smiled his first smile when we were in the U.K. and began to show remarkable progress.  We are still doing this programme diligently as it holds a lot of promise.

On returning from the U.K. we decided to include Hyperbaric Oxygen treatment, Amir was still very stiff though did have an improved range of movements and the big step towards this treatment was taken.  We had to “hammer”down quite a few doors in our country as the only facility was in the Naval base in the Military hospital. The doctors were wonderful in helping us obtain this treatment and thus began a pilot project for the treatment of children with Cerebral Palsy in Malaysia. A study that would involve 40 children with Amir and his friend Dominic being the first brain injured children in Malaysia to undergo this form of treatment. After the first 40 treatments, Amir showed a 50% reduction in spasticity. He was eventually weaned off oral Baclofen and Tegretol, for the petite mal that he used to have frequently.  To date Amir has done 200 dives and is seizure free.

Amir’s days were mundane and structured with a set series of exercises. Whilst I did take him swimming at least twice a week  (possible in or tropical weather) I didn’t think Amir had much fun, I read on the wonders of Hippotherapy and decided that was what my son had to have. Again the question of how?  I registered him with the Spastic Association here in Kuala Lumpur and I knew they had a Hippotherapy programme, unfortunately I was told that Amir was far too young and since he had no truncal control he could not get on this programme. By now it was 2 years post accident and I had become determined and not very accepting to the words "NO", "CANNOT", "IMPOSSIBLE" - I went to the equestrian club and  put my case forward, only to hear the same words, all the disabled children could sit in a saddle and ride independently and four years old was definitely far too young. I kept going back and finally they explained the need for a back rider and that they didn’t have one. Again another miracle, a young lady had been watching me push this case through and one day came up and said she would back ride Amir if we got approval from the Riding for Disabled Association in Malaysia (RDA). Three weeks later I got a call that this was approved and Amir was to go to the club to bond with his back rider, Nicol (whom I ‘m certain he is in love with). He spent time getting to know Nicol and his horse Minty and  later Manja.  Amir has been riding for about a year and has progressed very well. He has excellent truncal control and has learnt to take instructions from Nicol. We hope to see him riding a pony independently before the end of this year!!

With all the added  problems of having a brain injured child come the problems associated with health for any toddler .Being Indian ,I decided to try Ayruvedic treatment to harmonise Amir’s system. We did a 28 day course and found it effective.  He fell sick less often, had improved bowel movements and no more reflux. I intend to do at least one treatment a year for him.

Along our journey we have tried various forms of treatment from Acupuncture, Kinesiology, to Faith healing. What I found effective I carry on doing and the others have been put down to an experience in our life. The road ahead is long and often lonely. It is hard not to feel anger, hard to keep faith ,hard to keep motivated and  hardest of all: to be accepting of the situation. But it has also been a time where we have learnt to love. People with disabilities have a mysterious way of breaking down barriers around people’s hearts-barriers of fear and indifference. It has been a time for learning and a time for sharing. A time for realization: how fragile life is and how we need to value it.

Deep in my heart I know that  Amir will get his Life back !!

God bless and Never give Up.

Fezia